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Teenagers and Young Adults with Cancer. Linda Devereux Associate Director. Chemotherapy Conference 19 th March 2009. NICE IOG Published August 2005 Principal treatment centres for children and young people Shared care arrangements Care delivered through MDTs

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Teenagers and young adults with cancer

Teenagers and Young Adults with Cancer

Linda Devereux

Associate Director

Chemotherapy Conference

19th March 2009

Teenagers and young adults with cancer

  • NICE IOG Published August 2005

  • Principal treatment centres for children and young people

  • Shared care arrangements

  • Care delivered through MDTs

  • Age appropriate facilities for all

  • Entry into clinical trials

Key messages for commissioners
Key Messages for Commissioners

‘A small but uniquely vulnerable group…..new clinical collaborations that cross site-specialised models.

The need for all young people to benefit from the expertise of site-specific MDTs and the new TYA MDTs with unhindered access to age-appropriate care environment and psychosocial support is an essential aspect of the NICE IOG’

Professor Mike Richards, National Cancer Director/

Sheila Shribman, National Director for Children

– National Advisory Group

Key messages for commissioners1
Key Messages for Commissioners

  • All patients should be discussed at both a site-specific and TYA MDT meeting

  • All patients aged 16-18 years should be referred to a principal treatment centre

  • All patients should be offered referral to a principal treatment centre

  • The TYA MDT should have a role in co-ordinating treatment, psychosocial care and peer contact/support wherever young people are treated

  • Robust arrangements for transition should be in place

Key elements of the mccn strategy
Key elements of the MCCN strategy

  • Designated Principal Treatment Centre at Clatterbridge Centre for Oncology

  • Treatment and care concentrated in a limited number of Trusts

  • Teenage and Young Adult MDT working closely with site-specific MDTs and the Paediatric Oncology MDTs

  • TYA 4-bedded unit at CCO – planned for summer 2009

  • Dedicated haematology inpatient and day case facilities at Royal Liverpool Hospital

  • Treatment of young people with paediatric type cancers (up to 19 years) in the Teenage Cancer Trust Unit at Alder Hey Children’s Hospital

  • Specialist care will continue to be provided in specialist centres

Teenagers and young adults with cancer

Alder Hey Hospital

Paediatric type cancer

to age 20

Royal Liverpool University Hospital

Level 1 to 4 Haematology

Bone Marrow Transplant Service

Specialist Testicular Surgery

Soft Tissue Sarcoma Surgery

Principal Treatment Centre



Centre for Oncology



Linked diagnostic &

treatment centres

Specialist Trusts

Hospitals attended 16 24 yrs diagnosed 2005 mccn residents
Hospitals attended 16 – 24 yrs diagnosed 2005 MCCN residents

Who cares for young people mccn care pathways

Who Cares for Young People?MCCN Care Pathways

Dr Nasim Ali

Lead Clinician for TYA MDT

Clatterbridge Centre for Oncology


  • Teenagers and young adults fall into care gap between paediatric and adult oncology services

  • TYA require special attention as poorer outcome without this

  • Young people should have access to age appropriate care as well as clinical expertise

  • Centralised system- unique physical, social, educational needs as well as clinical needs recognised and supported by peers and professionals

Epidemiology of cancer in tya
Epidemiology of Cancer in TYA

  • Cancer is more common in young people aged 15-19 than in children (incidence = around 150-200 per million)

  • Incidence rates in young adults aged 20-24 higher than rates observed in the 15-19 age group (226 /million)

  • Profile of disease differs from that seen at younger ages- transitional pattern between that seen in children and 20-24 year olds

  • The pattern of occurrence in the 20-24 age group more closely resembles that seen in adults

Cancer in tya
Cancer in TYA

  • Late ‘Paediatric’ tumours- eg Rhabdomyosarcoma, Wilms, Neuroblastoma

  • ‘Age specific’ tumours- eg bone tumours and germ cell tumours

  • Early onset carcinomas- eg melanoma, thyroid carcinoma, nasopharyngeal carcinoma

Some common tumours
Some ‘Common’ Tumours

  • Ewing’s Sarcoma

  • Osteo sarcomas

  • Soft Tissue Sarcomas

  • Hodgkin’s Disease

  • Non Hodgkin’s Lymphoma

  • Leukaemia

Teenagers and young adults with cancer

  • Improved survival

  • Increased incidence and prevalence

  • Cancer is an important cause of death in children and young people

  • Less clear data in TYA than children

  • Late effects in survivors

Tya mdt

  • Multidisciplinary team

  • Discussion of all patients diagnosed with cancer aged 16-24

  • Based at Principal Treatment Centre

  • Coordinating function for treatment, psychosocial care and peer contact/support wherever they are receiving care

Multidisciplinary team
Multidisciplinary team

  • Medical & Clinical Oncologists

  • Haematologists

  • Social Worker

  • Psychologist

  • Palliative Care

  • Physiotherapist

  • Occupational therapist

  • Radiographer

  • Lead Nurse

  • Specialist Nurse

  • MDT Coordinator

Clatterbridge centre for oncology tya 16 24 years mdt newly diagnosed notification patient pathway
Clatterbridge Centre for Oncology TYA 16-24 years MDT Newly Diagnosed Notification Patient Pathway


Hospital ______________

Internal Notification

Referral to TYA MDT Coordinator / TYA Team from all peripheral Trusts

MDT weekly (Thursday a.m)

Clic Sargent Social

Worker CCO- 16-24, 18 year old treated at Alder Hey

AlderHey 16-17 years supported byAlder hey team. 16-24 inclusive for North Wales supported by North Wales Clic Sargent

Medical & Clinical Oncologist

Paediatric Oncologist


Lead Nurse CCO

Alder Hey Macmillan Outreach Team support 16 yrs up to 19. 19 -24 Palliative Care CCO

Clic Sargent Psychologist

16-24 yrs


OT & Physio

Outcome of MDT sent to referring clinician, GP, hard copy in notes. Member of team / lead Nurse to contact Patient / specific Specalist Nurse / Social worker / Psychologist

Patients may be referred back to MDT for discussion at any time

Referral and outcomes
Referral and outcomes

  • Referral Form

  • Outcomes form

  • Distribution of outcomes to referring clinicians, GP, MDT members

  • Patients can return to MDT at anytime

Principal treatment centre
Principal Treatment Centre

  • CCO

  • Associated centres- RLUH (haematology), Alder Hey, Walton

  • Development of Teenage and Young Adult unit at CCO

  • Weekly TYA MDT

Case history
Case History

  • 22 year old female- single mother of three

  • Clear Cell sarcoma of foot diagnosed 2006

  • Resected

  • Recurrence in groin lymph nodes 2007- treated with resection followed by radiotherapy

  • 2009- multiple pulmonary metastases

Case history contd
Case History (contd)

  • Treatment options – palliative chemotherapy

  • For discussion with patient

  • Patient DNA clinic on many occasions in fear of discussing management and anxieties

  • Role of Social Worker

Current functioning and future
Current functioning and Future

  • Establishing functioning of MDT

  • Develop the roles of the members

  • Ensure patients receive best specialist clinical care and support

  • Ensure clear clinical pathways

  • Entry into Clinical trials

  • Smooth transition to adult services

Thank you any questions

Thank YouAny Questions?